12th March 2018
Those living with rare diseases can sometimes feel forgotten by a society seemingly more focussed on other diseases like cancer and heart disease. Macquarie Park based international healthcare company Sanofi recently held a reception for the rare disease community, to assist in giving them a voice and raising awareness of rare disease within the wider community. Federal Member for Bennelong John Alexander MP supported the event, as part of International Rare Disease Day 2018. Mr Alexander said: “It was an absolute pleasure to support this worthy event held at Sanofi in aid of those living with a rare disease. “While those living with a rare disease may feel they’re quite alone in their situation, rare diseases as a group make up a significant number of the serious and chronic diseases that are out there in our community. “I was humbled to hear the personal stories of bravery, and to meet the many people who are going through such a tough time,” Mr Alexander said.
Building awareness of rare diseases is so important because 1 in 20 people will live with a rare disease at some point in their life. Despite this, there is no cure for the majority of rare diseases and many go undiagnosed. Rare Disease Day improves knowledge amongst the general public of rare diseases while encouraging researchers and decision makers to address the needs of those living with rare diseases.